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Autoimmune or what?
I am currently in search of a doctor that can help me. I have suffered helplessly with numerous health complaints that no one can diagnose. I have currently been suffering with this strange hand rash that started on my right hand and progressed to my left hand. My hands itch and are red and inflamed. I was told that I am suffering from dermatitis. HMM. Well, Its been damn near two years and I have had extreme weakness, pain in my knees and back to the point that it is difficult to stand at times, tired all the time, gastrointestinal upset, occasional trembling of my hands but have found that this may be the cause of low blood sugar that has seemed to surface now within the last year. Also, my past blood work have shown elevated levels of C-reactive protein as well as C1Q binding elevations. The level of my C1Q binding was 17 and the normal range is 0.0-3.9 ugE/mL. Also, my ANA screen was negative. My Eosinophil Cnt was low at 36 with the norm being 50-400 CMM. I’m told that the elevations of these tests are nonspecific and it merely indicates inflammation somewhere in the body. NO KIDDING! I felt like saying no S-H-I-T Sherlock you see my hands are inflamed and what disease doesn’t involve inflammation anyway??? I know medicine is not a complete science but for God sake. What were all those years of training for anyway? I think doctors need to stay informed and not just stop learning and researching when they get their degrees. Also, we as patients need to educate ourselves as well and take control of lives and diseases because sometimes it seems we are all alone. At least that is how I feel at times. If anyone can help with any suggestions or advice, it would be greatly appreciated. Thanks and good luck to you all.
I finally have a diagnosis! I am told that I have a staph infection that I got while working in the hospital. After two years of this I can finally get treatment and be cured. I'm not sure what type of staph infection I have, but no one I came in contact with got it. I am surprised and thankful no one else got it; considering the length of time I've had it. Its a shame that my other doctors; two of which were dermatologist, did not recognize it was staph. They only assumed that it was eczema due to my history. All I can say is thank God for my U of M doctor. I am currently being treated with oral and ointment antibiotics along with this cream to reduce the inflamation. I am already starting to see some improvement but I think it will take some time before I'm completely cured. Thank you everyone for your comments and concerns. Wishing you all the best of health.
I finally have a diagnosis! I am told that I have a staph infection that I got while working in the hospital. After two years of this I can finally get treatment and be cured. I'm not sure what type of staph infection I have, but no one I came in contact with got it. I am surprised and thankful no one else got it; considering the length of time I've had it. Its a shame that my other doctors; two of which were dermatologist, did not recognize it was staph. They only assumed that it was eczema due to my history. All I can say is thank God for my U of M doctor. I am currently being treated with oral and ointment antibiotics along with this cream to reduce the inflamation. I am already starting to see some improvement but I think it will take some time before I'm completely cured. Thank you everyone for your comments and concerns. Wishing you all the best of health.
Hi Cheryl, thanks for the post. I am in the process of more testing at this time. I do recall that my thyroid levels have been within the normal ranges. However, I do have a cyst on my thyroid and my mother had a goiter that resulted in a total tyroidectomy. I assume I will be next. My most recent blood work included testing for the thyroid but I do not recall exactly. I will double check it though. However, I am confused as to the TH1 or TH2 domination? It does sound like something I will have to research because you just might be onto something. Thanks...
Thank you for your post. I'm with you when it comes to taking your body in your own hands! (that sounded weird) or is it just me? lol Anyways, I will research the LDN and good luck to you and your husband. Also, I'm waiting on additional blood work but have found that I had a small amount of billirubin in the urine which my doctor did not seem to be concerned with? HMM From what I know, billirubin is related to the liver. I sure hope its nothing to do with my liver??? Later...
You need more information to decide what to do. Are you making antibodies to your thyroid, gluten or anything else? If so, are you TH1 or Th2 dominant, and is it an active antigen or immune dysregulation? This information can be obtained from blood tests. Cheryl
It seems that so many of us has a random collection of things which all point to inflammation but nothing specific. I`m going thru the same stuff - a have a little bit of this and a little bit of that! All I know is that I hurt and it`s a huge effort to do anything but want to lie in bed all day! If I have any more blood tests I may need a transfusion!
I know I have hashimotos as I take meds for that and I know I have arthritis in my neck and I have an MRI to prove it but everything else is a mystery.
My husband has MS which is also considered to be an autoimmune disease and has been taking nothing but LDN (low dose NALTREXONE) for four years. He feels as good as he can with it and has shown no disease progression. Thousands (I`m not exaggerating) of people take LDN for plenty of autoimmune diseases - MS, Crohns, RA, Fibromyalgia etc - and although it`s prescribed "off label" for these problems, it has the most amazing results. If you Google it you`ll get all the info you need - I`m not selling it so dont worry! You do need a doctors script and get it compounded at a pharmacy.
I`ve given up waiting to be diagnosed with anything else for now and am going to start LDN to see if it helps. It`s totally affordable at around $20 a month - cheaper than milk!
The side effects are almost non existant unlike steriods and all the horrible pain relief that give you extra problems you dont need. It`s been FDA approved for over 20 years but not for autoimmune disease. There are clinical trials all over the country (and world) taking place right now using it for Crohns, Fibro and HIV etc. It`s kept quiet as theres no money to be made from it as no one holds the patent. Big Pharma do not want you using it and going off their costly toxic drugs.
I dont care - at this point I`m taking MY body into MY own hands and trying it. I`m the one not sleeping and in pain. Check it out - nothing to lose and everything to gain.
Good luck!
I know I have hashimotos as I take meds for that and I know I have arthritis in my neck and I have an MRI to prove it but everything else is a mystery.
My husband has MS which is also considered to be an autoimmune disease and has been taking nothing but LDN (low dose NALTREXONE) for four years. He feels as good as he can with it and has shown no disease progression. Thousands (I`m not exaggerating) of people take LDN for plenty of autoimmune diseases - MS, Crohns, RA, Fibromyalgia etc - and although it`s prescribed "off label" for these problems, it has the most amazing results. If you Google it you`ll get all the info you need - I`m not selling it so dont worry! You do need a doctors script and get it compounded at a pharmacy.
I`ve given up waiting to be diagnosed with anything else for now and am going to start LDN to see if it helps. It`s totally affordable at around $20 a month - cheaper than milk!
The side effects are almost non existant unlike steriods and all the horrible pain relief that give you extra problems you dont need. It`s been FDA approved for over 20 years but not for autoimmune disease. There are clinical trials all over the country (and world) taking place right now using it for Crohns, Fibro and HIV etc. It`s kept quiet as theres no money to be made from it as no one holds the patent. Big Pharma do not want you using it and going off their costly toxic drugs.
I dont care - at this point I`m taking MY body into MY own hands and trying it. I`m the one not sleeping and in pain. Check it out - nothing to lose and everything to gain.
Good luck!
Hi, interesting that you would mention inflammatory bowel disease. I have been diagnosed with Gastritis and also suffer with that. Its non-erosive at this time but I do have to watch what I eat and drink. Do you think that the gastritis could be causing my rashes or is it somehow interrelated with a specific autoimmune disease. Thanks
Hi Jody, thank you for the information. I really appreciate the time you took in wanting to help. I will definately check in with iloveigs. Thanks again and take care.
Well, I can tell you this, most of us on this forum are on steriods & immunosuppressant drugs because of our immune systems.
There is a person here who may be able to help you with some of your inflamation issues & give you a direction to go in. I think her screen name is iloveigs so you might want to send her a brief note asking her if she may be familiar with any of your problems.
If you were to have an autoimmune issue they are not the easiet to diagnose I can tell you that. But you say your alt & ast were okay so I am really in the dark but I think you are headed in a good direction if you are going to an immunologist because certain diseases such as lupus being one are not always easy to diagnose & I don't know if it always shows on the alt & ast thingy or not but as I said iloveigs has those kind of answers.
I am sorry for your itchy problems, my 2 yr old g-daug has exema & we treat her with just Aveeno lotion plus the stuff for the bathtub & it takes total care of it, so it is something you might want to try.
Give a yell if I can help any farther. Jody
There is a person here who may be able to help you with some of your inflamation issues & give you a direction to go in. I think her screen name is iloveigs so you might want to send her a brief note asking her if she may be familiar with any of your problems.
If you were to have an autoimmune issue they are not the easiet to diagnose I can tell you that. But you say your alt & ast were okay so I am really in the dark but I think you are headed in a good direction if you are going to an immunologist because certain diseases such as lupus being one are not always easy to diagnose & I don't know if it always shows on the alt & ast thingy or not but as I said iloveigs has those kind of answers.
I am sorry for your itchy problems, my 2 yr old g-daug has exema & we treat her with just Aveeno lotion plus the stuff for the bathtub & it takes total care of it, so it is something you might want to try.
Give a yell if I can help any farther. Jody
Hi Jody, thanks for your reply. My primary care doctor referred me to an allergy doctor. This doctor ordered the c1q binding and c-reactive protein tests. I was told I was having a reaction to something but what? I've also been to see a rheumatologist for my back pain and again the word inflammation comes up. This doctor said he felt I had come kind of back inflammation? I don’t remember the name but I guarantee it had (itis) at the end of it for inflammation. lol Their solution for the problem is always steroids. As I've said, I do understand the need for them and they work to reduce the inflammation and suppress the immune system but the cause for the inflammation has not been found. Also, ALT and AST were okay. I have inflammation of the hands with small blisters, I've had episodes of red spots on my face and now it seems I have an acne problem on my back and chest but not on my face as much now. I am so weak that it’s an effort to breath it seems sometimes and I'm always tired. I could sleep all day if my kids let me. My knees and back are usually stiff most of the time and I've noticed that when I have joint pain and stiffness, the rash seems to get worse. I am in the process of scheduling an appointment with an immunologist at the University of Michigan. Also, I was reviewing some past blood work and tests and I'm wondering if it might have something to do with my thyroid. I do have a cyst on the thyroid but it is small and the thyroid doctor did not seem to think it was anything to worry about. I think I'm just having really bad luck with doctors these days. It’s been over two years now that I've been struggling with finding a diagnosis and if its anything serious, it will probably kill me before they find out. I'm so depressed because my hands look so bad and I really don't like going out anymore. I'm becoming so anti-social these days because of this and I really hate my skin. I do appreciate your comments and when and if I get some sort of information, I will pass it on.
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